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Saturday, October 12, 2013

It is the month of October

The month of October is down syndrome awareness month. When I think of creating awareness about down syndrome, I immediately think about how much
positivity and support we are surrounded by. When we got Samaira’s diagnosis a
couple of days after her birth, all our friends and family had the perfect
reaction. I don’t know how they got it so right. I don’t know how they found it
in them to react just the right way. They were happy for us, excited with us,
they cried with us, they felt our insecurities with us. But none of them were
sad. You know, not sad-sad. I don’t know how we managed to surround ourselves
with such amazing people with big hearts. While we have the buffer of our
friends and family who reacted perfectly, we know it is not the entire reality.
There are still people who feel sad for someone who has a baby with down
syndrome. There are still people who say “I am sorry” when they hear someone
has given birth to a baby with down syndrome. There are still people who say “what’s
wrong with him/her”. There are still people who say it is sad to have a baby
with down syndrome. There are still people who are insensitive. And we cannot
run from that reality. Therefore, we need a down syndrome month. A month to dispel
all the myths, to answer any questions, to create more awareness, to sensitize
people, and, to create more acceptance. It not only helps individuals with down
syndrome and their families, but I believe it makes other people better human
beings. So while having a special month to celebrate something you are trying
to mainstream seems counter-intuitive, it is very much needed until we get the
society to a state of unconditional acceptance and love.

History and time are filled with perceptions about down
syndrome – some of which are facts, some are myths and some are result of
society’s reaction and attitude toward down syndrome. Down syndrome is named after doctor John
Landon Down, who was first to categorize the common features of people with
down syndrome. Dr Jerome Lejeune discovered it as a genetic condition whereby a
person has three, instead of two, copies of the 21st chromosome. In
a process called non-disjunction, the two copies of chromosome 21 fail to
separate during the formation of egg, resulting in an egg with two copies of
the chromosome. When the egg is fertilized, the resulting fetus has three
copies of chromosome 21 in each of its cells. It has nothing to do with race,
nationality, socioeconomic status, religion or anything the parents did during
pregnancy. In the 1980s, the average lifespan of a person with down syndrome
was 25 years. People with down syndrome typically have physical and intellectual
delays from birth but there is a wide range of abilities within the population
that are impossible to predict ahead of time. People with down syndrome are
significantly predisposed to certain medical conditions including congenital
heart defects, sleep apnea, Alzheimer’s, hearing loss and hypothyroid. There is
also evidence of increased risk of celiac disease, autism, childhood leukemia
and seizures. Most online and otherwise resources list some common physical
traits of down syndrome such as flattened appearance on face, high/broad forehead,
upward slant to eyes, smaller nose, small ears, protruding tongue, short neck/hands/legs
and poor muscle tone. There are certain stereotypes associated with down
syndrome – that they are happy, loving, angels. Sometimes it is true and
sometimes it is not. People with down syndrome are people. So sometimes they
are happy and sometimes they are sad. Sometimes they are loving and sometimes
they are feisty and quarrelsome. Sometimes they are angels and sometimes they
are little devils. Just a couple of decades ago, parents and doctors preferred
to institutionalize a baby with down syndrome. A lot of traits such as lower
IQ, low life expectancy and lower-perceived abilities was a result of this
inhuman practice. As more and more people are becoming aware and sensitive and
accepting –early intervention programs, medical care, quality educational
programs, stimulating environment, positive attitude of parents and society
have made the outlook toward and reality of down syndrome a drastically different
one. Life expectancy of an individual with down syndrome has gone up to 60,
average IQ level has gone up, the quality of life has gone up. People with down
syndrome attend school, work and contribute to society in meaningful ways. While
a quick search of down syndrome will bring results of physical features
typically associated with down syndrome, very rarely but surely, you will come
across resources that talk about the beautiful Brushfield spots in their eyes,
their perfect eyebrows, their beautiful silky hair, and their warm irresistible
hugs.

Something that all the people in the special needs community
know is the difference between “normal” and “typical”. The opposite of normal
is abnormal. Opposite of typical is atypical. So when you refer to a kid who
does not have special needs as normal, it implies that the other kids are
abnormal. Whereas referring to them as typical, the preferred way, means others
are atypical. Referring to a baby/person as down’s baby (incorrect usage), or
down syndrome baby means you are defining a baby with this condition. Whereas
referring that individual as a person or baby with down syndrome means that
they are people first and then the condition. This is called people-first
language. Chromosomes decide physical and intellectual traits of beings. A certain
type of chromosome gives people blue eyes, or blond hair, or dark skin, or tall
height. But there is more to them than the color of their eyes, their hair
type, their skin color and their height. Just the same way, three copies of 21st
chromosome decides certain physical and intellectual traits in people with down
syndrome, but there is much more to them than just those traits.

Samaira is almost 22 months old now. I cannot believe how
time flies. When she was born, she was the most peaceful baby. Share rarely cried.
She slept through the night. She showered us with smiles. She had the most
beautiful, innocent eyes. She had rather calm demeanor. She always gave me the
most body-melting, heart-mesmerizing hugs. She ate everything and anything I gave
her – broccoli, spinach, flax-seeds, and spicy Indian food. As she is growing
older, she is adding more colors to her personality. She isn’t always her
charming self, but most minutes of the day she is. She does not always sleep
through the night – it depends on how she is feeling and if she is congested. She
still has the most beautiful and innocent eyes, but with a touch of naughty. She
has learnt to say no, and with a lot of meaning behind it. So she says no when
she does not want to give me a hug, and I respect that. She yells and screams
and shouts when things don’t go her way. She is picky about what she eats. She doesn’t
eat spicy food anymore because she was given non-spicy food immediately after
Rehan was born and now she is resistant to spices. She is still very warm and
affectionate. She still gives the most breathtaking hugs. She loves her baby
brother immensely. She pours her heart out on him. She does not like it if he
is upset or crying. She rocks him in his car seat and Shhhhhhhs him when he is crying. She is quite a performer. When she
knows there are people around here, she reacts in one of two extreme ways. She either
starts crying and wants to get away from the crowd, or she gets in the center
and wants to laugh every time others in the room laugh and play the adult. She talks
a LOT. She blabbers all day long. She loves to read books. She loves to dance
to her toy-music. She loves her some crackers. She requests Siddharth to sing
the song Humma Humma (from the Indian
movie Bombay). Samaira loves going to
her day care. In fact she looks forward to it. She has her own social circle there.
She wakes up in the morning and says morning
mumma. She loves being bounced on the ball. She loves it when Siddharth
holds her upside down in the air. She pretty much enjoys anything that involves
doing monkey business.

What I am trying to say in so many words is - it really is ok. It really is no big deal. It really is just an extra chromosome.

Siddharth and I are not too sensitive about the people first
language. I don’t always correct someone who refers to their child as normal or
refers to my baby as down syndrome baby. I didn’t know the difference between
normal and typical before Samaira. I don’t know if I would have referred to
someone as a down syndrome baby before Samaira. It’s hard for me to imagine
what I would have done. So I am ok if people don’t always use the right
language. I do care about people’s intent though. I care that their heart is in
the right place. I care that they care about Samaira. I care that they love
Samaira unconditionally. I care that they treat Samaira with affection,
tenderness, discipline and dignity. I grew up in a family in which we did not do
things because that’s how society does it. My parents gave us the best
education and the best opportunities at every stage in our lives, even if it
defied societal-norms. So society’s preconceived notions about down syndrome
did not come in between their unconditional love for Samaira. They loved and
cared for, took pride in and pampered Samaira just as they do any of their
other grand kids. Our friends and family have created this happy bubble around
us in which life is perfect and the world is all blue sky, shiny stars, purple
flowers and flying hippos. But I know there is a world outside my world. And we
will surely venture out in that world someday. It is for that world that I write
today.

October is down syndrome awareness month. Never hesitate to ask us any questions about down syndrome.